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Suspect my 5 yo has Tourette's - please help


Mom04
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Hi everyone - just joined the forum today. I have been searching and searching for forums and help on-line for about 2 weeks. We suspect that my 5 year old may have Tourette's, but I'm so confused. Please forgive the LONG post, but I've been dying to get this off my chest and get some feed back from others. Here's a little background:

 

My only son just started Kindergarten in Sept. Prior to Kindergarten, he just went 2 days a week to a in-home daycare, so this is his first time in an actual "school" system. The first week was tough....he cried everyday and every night. It was heart-wrenching to put him on the bus while crying, but I had to be strong so he'd get used to it....he has always had a tough time with transition.

 

Anyhow, after only a week, he looked forward to going to school and he got a great progress report the first month, with the exception of "sometimes we have to re-focus him because he tends to wander off". Then about a month later, the teacher called and said that she's concerned with his "attention" (or lack of). She said he is very smart, and never mis-behaves, but is constantly moving. They have an OT in school who suspected (after seeing him a couple of times) Social Integration Disorder.

 

I did some research on SID, and although there were some things I could relate to....like he hates water in his face, moves constantly, can't stand in lines, scared to death of all animals, etc.....most things didn't seem to fit. Just as I was saying this to myself, the OT called and said he doesn't "present" for Social Integration...but he is showing signs of tics.

 

She asked me if he throws things at home. ALL THE TIME!!! She asked me if he uses the word "butt" at home. ALL THE TIME!!! Etc., etc. So, we made an appt with a pediatric neurologist but couldn't get in until next April. I'm devastated because the tics seems to be getting worse and I'm not sure what I'm supposed to do (discipline, not discipline, etc) in the meantime.

 

LONG story Longer....Just wondering if you all think these are signs of Tourette's. Strange thing is, neither my family nor my husband's has any history of any disorder:

 

screams real quickly for no apparent reason

says "fresh" words constantly (not just every now and then), like "drag my butt on the ground", your butt smells, booby

throws things all the time....toys, blanket, food, pencils in school, knocks things over

fake belching

clearing of throat when he is physically excited (like when he plays the drums)

spitting on occasion, although I haven't seen this myself.

Licking things...like shoes, signs, windows

 

I just don't know what to do and waiting 2 months for the doctor is killing me. My sweet, smart, musically gifted boy, is having trouble daily in school and it seems to be getting worse. I'm thinking maybe because he's stimulated so much at school.

 

THANK YOU SO MUCH IF YOU READ THIS FAR!! I've had my melt downs and crying and now I'm ready to just get him help.

 

Laurie

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Hi

 

good for you that you are seeking to find answers

 

yes, this may be tourette BUT there are also other things that cause these kinds of tics and behaviors so if you dont have a family history of tics, TS or OCD you may want to especially start checking these other possible causes

 

first is usually strep related tics & OCD. A condition known as PANDAS or any other infections?

 

also allergies...some kids who are gluten and/or dairy intolerant have tics, also other food or environmental allergies may be responsible

 

some kids seem to start tics after receiving vaccinations

 

others may have tics related to TMJ (jaw/teeth) problems

 

there are numerous other potential triggers so do start reading around our forum and keep asking questions

 

here are some helpful threads

http://www.latitudes.org/forums/index.php?showtopic=2459

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Thank you, Cheri! There really is no history of any disorder in either family, so perhaps this is just tics due to something else. He doesn't show any signs of OCD and has only had strep once. I want this Doctor appt more than anything so we know what we are dealing with and can get my precious guy some help!!

 

Thanks again for the reply, I really appreciate it.

 

Laurie

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[Laurie,

Welcome! I have been dealing with tics for about 3 years now, though, like many people on this forum, much longer once I knew what to look for. Many things that my son did when he was a toddler (he's almost 9), were tics. It wasn't until he started with a neck tic that I was alarmed and made an appt with a ped neurologist. Even though you can't get in to see your doc for 2 months, don't despair. Just as Cheri mentioned, search the forum and the related threads because as many of here can attest, many of the neurologists are too quick to prescribe medication. Do your research. Has your son had these tendencies that you mentioned for a while? Did he do things as a toddler that were unusual? My ds constantly played with his belly button and would nuzzle his head into us...almost like he needed some sort of sensory thing. I don't know but definitely unusual. He was a hummer. When he started his neck tic at the end of kindergarten, then after seeing a neurologist who, after one visit said that if his tics ever became really bad, we could try medication, I researched and researched and researched. Everyone is different. All of our bodies are different. What works for some of us increases tics for others. Remember, he is still your precious guy. Try not to obsess over his tics, it will upset him more. Love him, hug him and kiss him. Try, hard as it may be, to be strong in front of him. Many of us have gone into the bathroom and just cried. Be strong for him.

 

San

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Hi Laurie,

 

The questions the OT asked are very curious. My son is 5 and I also suspect he has TS. He also throws things (not all the time though... just when he is really frustrasted/mad). I recently read that TS can be associated with a quick temper which he DOES have. As for saying "butt" all the time, I thought all 5 year old boys had a bit of a fascination with those types of words (butt, poo, pee, fart, etc.) Perhaps not. B) My son has been on a poo poo and pee pee kick lately. I hadn't attributed it to the TS, but perhaps need to rethink that.

 

I'm not sure what to make of your son's behaviors. Some do sound like they could be tics (screaming, belching, throat clearing) if they happen consistently enough. Others sound more like they could be OCD type behaviors/tics (licking things). I'm no expert though, as I've only been dealing with this for a little over a year. There are others on this board who've been dealing with TS a lot longer. Hopefully they will share their thoughts also.

 

Cheri is right though... there are a lot of different things that can trigger tics, so it is worth investigating. I am just beginning this process myself. I would recommend you push the doctor for some testing. I saw a pedi neuro about 2 months after my ds' tics started and was told "it's probably transient", then we were sent on our way with no testing. Well... here I am a year+ later wishing I had pushed for more testing early on. We are seeing a DAN doctor next week, so I'm hopeful he will order all the tests I want done.

 

Hang in there!

 

Mary Beth

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Hi Laurie -

 

My son is 7 and has TS. He was diagnosed shortly after his vaccinations at 4ish/5. (don't remember exactly, never have been good with dates!) He is what I'd call mild, but being in first grade, kids notice now. He stretches his neck or clears his throat. He'll toungue click or squat. He'll roll his eyes or blink, or head nod. The thing is that he rarely does all at once except if he's super excited like a birthday or something. Even then, it's not as bad as one might think. Im his mom and am more conscious.

 

I would say that as much as I have fought the diet, it had helped him. When we went off of it in September, after a few months, tics started worse. When we put him on magneisum, all vocals and eye roll went 90% away. What we are left with is movement. I am looking into Bonnie Grimaldi' s vitamins for that. I have only not ordered due to a slight soy allergy and, since many of the vits have that as a base, want to check with a homeopath.

 

My biggest suggestions are 2:

 

1. Don't bring it up to him. Don't create a problem that isn't there. If he tics he can't help it.

2. This goes along with #1: Create the most positive, loving environment you can. It alleviates tics more than any meds could ever do. I can truly say that my son is one of the most confident, happy go lucky, laughing and kind 7 year olds I know. He is known for being Mister Funny and Mister Social. He likely will run for class president (wacky charter school... they do a lot of independent stuff. The TS is not an issue at all.)

 

We don't have behavior issues, but some ADHD issues. He is not diagnosed with it, and due to the super healthy diet he is on, he most likely won't need that label for a while!

 

I hope you'll consider an excellent homeopath before meds. My long journey toward feeling comfortable with our natural approach was that his tics were not interfering with him socially or physically. It only bothered ME. Not a good enough reason to do it. Everyone is different though - that's what is great about this forum. You will find support for whichever way you decide to go.

 

Keep us posted!

 

Andrea B)

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Hi- I usually post on the PANDAS forum (have dd6 and possible ds2 with PANDAS) but was on here to post a question and saw your post. I just wanted to say that you said you saw no OCD in your son but in our experience, licking stuff has been OCD driven. My dd licked stuff when in an exacerbation. Kids with PANDAS also get a lot of Sensory Integration Disorder (SID) issues.

 

Not saying your son has PANDAS but I would certainly take a serious look at it. If it were me, I would post your info over on the PANDAS forum if you haven't already and have a look at the FAQ and other useful threads "pinned" at the top of the forum.

 

There is also a thread on OCD behaviours that you may not realise are OCD behaviours. OCD manifests in some unusual and unexpected ways... good luck :-)

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Thank you Dut! Would you mind posting the link to the OCD behaviors topic? I'm having a hard time finding it.

 

We finally got an appt today at Boston Children's with a neorologist. I can't wait, but I'm nervous, too. I am going "armed" with tons of notes and suggestions (right from this forum!!) so we can give the Dr. an accurate background, and hopefully, will come home with a realy diagnosis after careful consideration of everything I have to say.

 

I'll let you all know how it goes.

 

Thank you!

Laurie

 

 

 

 

 

 

 

Hi- I usually post on the PANDAS forum (have dd6 and possible ds2 with PANDAS) but was on here to post a question and saw your post. I just wanted to say that you said you saw no OCD in your son but in our experience, licking stuff has been OCD driven. My dd licked stuff when in an exacerbation. Kids with PANDAS also get a lot of Sensory Integration Disorder (SID) issues.

 

Not saying your son has PANDAS but I would certainly take a serious look at it. If it were me, I would post your info over on the PANDAS forum if you haven't already and have a look at the FAQ and other useful threads "pinned" at the top of the forum.

 

There is also a thread on OCD behaviours that you may not realise are OCD behaviours. OCD manifests in some unusual and unexpected ways... good luck :-)

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Hi - I'll post it now for you. I don't want to be flogging any dead horses but just be aware that few drs seem to recognise or treat PANDAS, although the numbers are growing and some still adamantly believe it doesn't even exist. Good luck :-)

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I'm starting to get that impression after reading on this board. I plan on DEMANDING a strep test and a discussion on PANDAS, because as I said, there is no history of any neurological disorder in my family. Hopefully, the Neorologist at Children's Hospital is a bit more educated since he deals with just children and this is his specialty.

 

Hi - I'll post it now for you. I don't want to be flogging any dead horses but just be aware that few drs seem to recognise or treat PANDAS, although the numbers are growing and some still adamantly believe it doesn't even exist. Good luck :-)
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Hi. I'm from the PANDAS forum. First, let me say that when I read your son's story, I admit, I look at it from the PANDAS point of view. Sometimes Ican read anyone story and see PANDAS lingering in it.

 

When my son was 5, his behavior started to change. This all coincided with him starting kindergarten so I could find a bunch of excuses for why these odd things were happening. But there started to be more and more problems.At the ped's office for his 5 year check up, he behaved horribly ad I todl everything that had been going on. She said she read about PANDAS before and would run a strep test just to be sure. My son had no sore throat, no fever,nothing. rapid came back negative. But two days later, I got a phone call, the culture they also ran came up +. He did in fact have strep. That spiralled into going to see a neurologist and learning everything I could about this disorder.

 

So, the first thing I have to say is to get your son a strep test. If the rapid comes back negative, make sure they run a culture. If the culture comes back negative, then you can have blood tests done to check for past infection. Just because your child has no symptoms of strep, it doesn't mean they do not have it. Do not wait until April. Go to your pediatrician and get a strep test.

 

 

So, back to your son's symptoms.I'm going to compare them to my son's. My son had separation anxiety, would let out a scream for no reason out of nowhere, did raspberries at us and at stangers if they tried to give him any attention. He had sensory problems too. You couldn't touch his head, or touch is shoulders a certain way, etc.My son also had a lot of OCD. The things with OCD is that a lot of people don't really understand it or realize their child is exhibiting it. My son did have the textbook dirt, germ, contamination fear with his first exacerbation, but also had ore subtle ones. here is a list of OCD symtpoms as seen by parents on the PANDAS forum...

 

http://www.latitudes.org/forums/index.php?...ic=6153&hl=

 

What I would like to ask is if these chages occurred out of no where, progressed very quickly or have been simmering since you can remember. Has he been sick recently? What vaccines did he get at his last appt and when was that? Did these changes coincide with anything? By any chance is there a family history of Rheumatic Fever or Chorea?

 

I'm also going to post a PANDAS Fact Sheet for you to read..

 

http://www.latitudes.org/forums/index.php?showtopic=6265

 

Please, ask us any questions you want. Hopefully the answers to those questions I asked will help me and otehrs give you an opinion on PANDAS. Also,you can use you same user name for the PANDAS board so fee free to visit both the TS and PANDAS forums.

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I do just need to mention for balance here that some people with TS, or with allergic reactive tics, or some other trigger etc. can also exhibit symptoms of behavior that are erratic and "off the wall" in combination with tics

 

I think it essential to check for a strep connection....but it isnt necessarily the ONLY factor that can result in these symptoms

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